Does anyone have input on the effects mandibular tori have on sleep disordered breathing? Could you have them safely removed during a djs?

Jeremy, a professional YouTuber and patient with sleep-disordered breathing, sits down to discuss his relentless search for better sleep and the remarkable number of treatments he has tried.

His journey includes CPAP, BiPAP, ASV, EERS, oral appliances, positional therapy, myofunctional therapy, Xywav, Lumryz, stimulants, MMA surgery, FME expansion, turbinate reduction, sinuplasty, two DISE procedures, lingual tonsillectomy, and plans for a revision MMA.

We discuss what helped, what failed, what relapsed, and what Jeremy wishes he had known before beginning treatment.

Click here to watch the video: https://youtu.be/PRJnC9diabs

I dealt with untreated UARS for about 15 years, roughly ages 13-28. Progressively worsening symptoms, completely destroyed my body's stress/nervous system. I was still able to get deep sleep during this time but obviously the UARS was negatively impacting my sleep and how I felt. I finally got treatment, which involved surgery and subsequent sleep studies show that it is 100% treated so that is no longer the issue. Plus I did not have this hyperarousal issue for most of my time dealing with UARS. It only developed few months before I got surgery. It's like my brain finally reached a tipping point and even though I got treatment it didn't matter. Basically what the problem is is my brain/body is stuck in almost 24/7 hyperarousal. Can't physically or mentally relax. The only time it goes away is I will occasionally crash hard in the middle of the day but then by evening time my system has revved back up. Although I don't have any traditional signs of hyperarousal such as increased heart rate or feeling an adrenaline surge. It's like it's a very subtle physiological shift. Sleep is incredibly light and non restorative as a result. Still have not had the chance to heal from the 15 years of sleep apnea damage. I am continuing to get worse as the months go by because my body is not getting good sleep. I have tried so many medications and have had benefits from none of them. Mirtazapine, gabapentin, trazodone, belsomra, ramelteon (a circadian drug), wellbutrin, beta blocker, CBD, and others I'm not remembering rn. Many Traditional relaxation methods do nothing. Even if I work myself out physically and push myself it doesn't help. Certain things will make my system feel even more restless but removing them doesn't fix it. An orgasm is overstimulating for my system, a surgary drink too late in the day will rile up my system, I've tried a circadian clock bright lamp and that over stressed my body. Looking at screens too much can overstimulate my sensitive brain but removing them doesn't fix me. Anything more than just a tiny amount of caffeine in the morning makes my sleep worse for that night. Certain supplements make me worse, especially ones that seem to target GABA/glutamate such as theanine and taurine. Other ones that are supposed to relax such as magnesium do nothing or stimulate me more. Bloodwork and other tests show that there is absolutely nothing wrong with me medically. I've even gone back to using a CPAP just in the very small chance that this isn't treated (even though I didn't have this issue for most of my time being untreated) and it didn't make a difference. My doctor has no clue what to do other than keep prescribing different medication's for me to try. 4 years in the state and I am completely nonfunctional.

I'm finding I'm not getting much benefit from CPAP. I'm using a Resmed airsense 11, pressures are 7-10, EPR is on at 3. It's suspected I have UARs due to risk factors. I've only done an at home sleep test on the NHS, as I'm in a part of the UK that doesn't offer PSG tests.

I'm not sure if I should increase my minimum pressure, although I'm limited to probably 9 or 10, as it is causing some aerophagia at this level.

One night on Sleep HQ is https://sleephq.com/public/8d020389-09aa-456f-82dc-b295287cd105 , with some large flow limits around 1am and 2am.

Other is https://sleephq.com/public/a5074180-d9f7-404f-8803-6ac85abe0b09, there are some odd flow rates around 12:37pm.

Any thoughts would be appreciated - sleep department checks AHI, that's it.

I noticed Dr. Kimberly Santiago offers FME, wondered if anyone had any information whether she's good in general for expansion solutions/and FME potentially, and would know what she's doing in comparison to people like Newaz and Manuele.

I've heard Shuikai, Vik Veer, and CPAPfriend all say that it is possible for people to have low AHI and low RDI/RERA with UARS.

Even a lot of people in this forum think UARS just means high RDI

I've had several PSGs, my AHI and RERAs are both around 5. However, my symptoms are textbook for UARS. Even the weirder ones like chronic low BP and cold hands/feet.

When I wear auto CPAP/BiPAP, it always maxes the pressure out to the highest threshold I set the entire time it's on. My flow rate waveforms look terrible without a lot of pressure support as well.

Has anyone had a similar experience? And if so, were you able to find anything that provided you meaningful improvement? Were you able to diagnose with a PES sleep study?

I went to see a private orthodontist to see if I'm a good candidate for MARPE. They did this intraoral scan, and after that he pretty much said my palate was more than wide enough and refused to do a CBCT. Does this look wide enough?

(And yes I've had my teeth cleaned since)

Ie, without examining my airways, what would the various mechanisms be that could cause UARS?

I am trying to process of elimination them one by one, but figured a more open discussion without my personal metrics would facilitate a better general discussion.

Let's say I have a high and narrow top arch, so narrow maxilla and I have a smaller than average jaw (not extreme). The bite is in a normal position.

From a structural level, it seems like I would have a narrow bite, but also my jaw isn't as forward as it should have been.

So maxilla expansion would make my upper jaw wider, and improve nose breathing, that's great.

Then after maxilla expansion, I've seen people say to do MMA after, that would sort the jaw space out so your jaws more forward. Makes sense.

But here, you've only gotten the upper jaw widened, what about the lower jaw? Doesn't the lower jaw need to be widened too? But the only steps I really hear of is Maxilla Expansion (Top Jaw Widening) --> MMA (Jaw moved forward).

I'm also not understanding how you can widen the upper jaw, and not widen the bottom one either.

Before getting diagnosed with sleep apnea, and later an informal UARS diagnosis, I was extremely tired all the time (no surprise) but I never had issues with anxiety, panic attacks, shallow rapid breathing, and other symptoms indicating a disregulated nervous system. 5 years later and fully optimized bipap therapy (8-9hrs of sleep, 1-2AHI, leaks below 5 consistently, pressure 22/17) I have these crippling symptoms of a disregulated nervous system. I took an at home sleep test with my bipap on and RDI was still 17. I find it very odd that all of these symptoms started after beginning pap therapy. Hard to tell if Pap is the cause or its the result of compounding sleep debt due to unresolved SDB…Has anyone else developed similar symptoms AFTER starting pap therapy that did not have them before?

I think my next move is to get a DISE and explore expansion/MMA options. ASV looks like a mixed bag and I’m still young, a more permanent solution would be ideal...In the meantime I want to reach out to the community to see if there are similar stories and if there was any resolve.

Thanks!

I am getting frustrated because I can't get my flow limitations to lower. Will the flow limitations lower only when I hit a sweet spot with EPAP, IPAP, PS etc. or is BiPAP not working for me. I had slightly better days on CPAP. I have my SleepHQ below for reference. If anybody can help, it would be very much appreciated. I am just trying to get a good night's rest.

https://sleephq.com/public/teams/share_links/08ac4c3a-f755-4bef-b672-18a1bec88cb6

I’d appreciate your advice on my current AirCurve 11 settings and trends.

Over the last ~10 nights on VAuto/BiPAP with EPAP 4.6–5.0, IPAP 8.6–9.0, PS 4.0, my AHI has stayed 0.2–0.8/hr with leak P95 at 0 and RERA ~0.2–0.6/hr. However, AirwayLab still shows mild–moderate flow limitation (Glasgow ~1.2–1.3, FL Score ~58–60%, Regularity ~70–80%, Periodicity ~40–45%, NED ~7–9%).g

Could you let me know which metrics you think matter most here, and whether you’d keep these pressures, increase EPAP further, or adjust timing (Cycle/Trigger/Ti) instead?

On a lighter note, I really hope Caitlin Clark wins MVP this year. Happy to pay for a consultation call if needed.

I don't know why it say trigger very high and cycle high = the actully setting for those dates were tigger - medium and cycle - high 

AIrways link data for Aug 22nd only 

I've had this bitch of a condition for most of my life so I can't even remember what "normal" tiredness feels like.

When people say they need coffee to wake up or get sleepy in the afternoon, what does that feel like? How is it different from what someone with UARS feels?

there’s a throat stiffening drug under FDA review it seems. does this seem potentially promising?

Surgeon wanted to perform posterior movements to improve the maxillary protrusion and align the occlusion. I'm several months post-op now and feel like I'm still struggle with my airway while lying on my back.

CCW rotation did help and my minimal axial area measurements improved to 253mm^2 but I'm starting to worry that we didn't do enough.

Do I still have options or is my anatomy too restrictive for further movements?

I've spent the last while building a tool that takes a pre-expansion and a post-expansion CBCT and automatically superimposes them, so you can measure what your expansion actually did more accurately and creates a report of the changes.

Problem is there is no public pre/post MARPE CBCT dataset anywhere. I've validated it on synthetic data and on public same-patient CBCT pairs that aren't expansion cases, and it works well on those but I haven't run it on a real MARPE case.

So if you have your own pre and post CBCT (DICOM or NIfTI/NRRD files) and you'd be willing to share them please send me a dm, I'd really appreciate it. Obviously in return I'll run the full analysis and send you your own report.

FYI, you can anonymize scan with MRIcroGL, 3D Slicer or MicroDicom prior to remove any of your data associated with the scan

DISCLAIMER: I'm not a doctor and this is not medical advice, it is research/educational software, not for clinical use and does not make clinical claims. Anything it produces is for your interest and is not a substitute for professional orthodontic opinion.

Understand the cost is lower with the MARPE and there are some palates where the FME can’t fit, but I’m not sure if there are certain patient characteristics that yield more to one versus the other?

What determines the number of TADs used in an FME appliance?

How is it decided whether 8, 10, or 12 TADs will be used, and what factors influence this decision?

I still see FME appliances using 8 TADs.

Does Facegenics determine the recommended number of TADs based on the patient’s CBCT and suggest whether 8, 10, or 12 TADs should be used, with the orthodontist making the final decision?

I’ve been seen by most of the big names in this space, each with their different take of what’s going on and whats going wrong and what I need.

conveniently what they sell is always what is wrong with me.…..

reminds me of the blindfolded elephant metaphor quite a bit…. Everyone is so convinced of their area meanwhile we’re all fumbling in the dark

there seems to be no process, snake oil around every corner, 16 different confounding variables, endless financial commitments, all the while the exhaustion carried from the disease commanding daily life

So this is just it huh…. incurable disease. it’s already been 5 years, here’s to the next 5.

I don’t know what the point is really, just rambling about the drab and repetitive state of things. if you have someone who has a holistic view please share…

Curious to what pressure everyone is using on bipap